Patients will feel encouraged to share concerns that they have about things that an office visit might not be well suited to help (bereavement concerns are a good example of this as clearly most of us don’t have the time to take off to sit in a waiting room with sick people when they’ve got families gathering, funeral arrangements to make, etc).

Watching the video and it’s quite clear that the team at St Mary’s clearly have no imagination for the opportunity that mHealth offers (Ivor describes how they have his team in 2017 trying to polish paper based clinical records that are in clipboards on the end of beds in a trust that has an income of more than £900 million per year) and Ivor’s experience of medicine comes across to be like something he’s picked up from TV or anecdotes that have been shared with him by medics he’s met in his work at the Helix Centre (“you’d be surprised how many people turn up to A&E with the weirdest, vaguest symptoms that would be you know like chest pain and they’ve got like stage 4 lung cancer that they didn’t realise they had and at that point like you have days or some people just like arrest right there”).

“(51:40) it’s like a weird conflict. The app that we made ‘Cove’ is like a music maker, so you can make music and we built it for young people experiencing bereavement. So we found when we started the project we understood that a lot of young people going through a bereavement can find it very hard even when you’re a teenager to explain how you feel let alone something as devastating as losing your mum or dad or a brother or sister and our kind of hypothesis was that a lot of these social media platforms a lot of technology that is currently available have not been designed for grief. They’re not designed for the reality of losing someone. It’s too binary or it’s not deep enough it doesn’t provide you with the sort of elbow room to kind of be expressive in that way so we were like what if we just provided that alternative and how would that fly? But there’s something funny about it like everyone on our team has lost someone in the last year and we’re like whenever like one of our guys was like I’m really sorry I haven’t been in touch my gran’s just died and I’m like yeah playing Cove is probably the last thing you’re ever going to do.I feel really bad but the whole point is like there is a time and place for the technology. so for us it’s not like ‘i;ve just lost someone i’m going to use an app, it’s just never going to happen”

Even as a musician with direct experience of tragic bereavement as a child I cannot imagine why a young person in such a position would ever want to use an app to make music that has been built by a designer working for a Hospital in the hope it would serve young people who have been recently bereaved.

I’m also completely stunned to learn that qualified Doctors at St Mary’s (a part of Imperial College London – the biggest medical school in Europe) are still using pagers and being taught to approach end of life discussions with Patients in a Paint-by-numbers approach with cues provided by an iPhone app that’s been built by tech designers who don’t have any real clinical experience:

To end positively Ivor proposed an interesting question needed answering: Technology is the answer but what was the question?

I think the question was: What do I need to understand better in order to make this quality documented healthcare affordable to more citizens?

Update Friday 10 Feb 2017: A response from @JimARosenberg to seeing this post shared on twitter:

This reminds me of an old Samsung Galaxy Tablet I have kept in a drawer as a memento. I used it on the bed of a relative I adored who was dying of cancer to show her a slideshow of some photos I’d put together for her. I could never forget how with very little strength in her body she pushed herself up and kissed the screen when I flicked to the photo of a very special new baby in the family that she would never see. 100% agree: “Yes tech fits in Endoflife”…

Update Friday 10 Feb 2017: A response from Child Bereavement UK after I asked (via twitter) if they had any evidence that pointed to the value of their iPhone app:

“Thanks for your interest in our mobile app which was created by a group of bereaved 11-25 year olds working with Child Bereavement UK for other young people who have been bereaved of someone important to them. It is also designed for use by their friends, parents, teachers and other professionals who would like to know how to help support bereaved young people.

The app was initiated and developed by the bereaved teenagers in response to the lack of accessible resources aimed at their age group.

To date, there have been 3,110 downloads in over 40 countries worldwide and it has won an award from the Patient Information Forum.

Feedback from users has indicated benefits around accessibility and reduce sense of isolation:

“The app enables you to get the support you want in your own space and your own time.” – Charlie, 15

“It would have helped me to feel I’m not alone and given me ideas of how to cope when my Dad died” – James, 17”

Update Friday 11 March 2017: I’m preparing for a talk to a group of medics in which I will be discussing this post and edited a couple of cartoons to help get my points across. Thought I might as well post them here (let me know if there’s anything you think I could add in the comments):